In the meantime...

After making the decision to go forward with a bone marrow/stem cell transplant, we were just trying to get our feet on the ground. It took a while to learn what our "new normal" would be like for life from that point on.

Kal had started taking his medicines MUCH better, with the help of his new feeding (NG) tube. We were also giving him a night time feeding with a pump that would slowly feed him during the night. I had the option of whether I wanted to pump breastmilk and use that for the night feeding or to use formula. To be frank, I just couldn't handle sitting on the couch all day pumping. I couldn't. I was already trying to learn how to give him all his new medicines, dealing with an extra clingy 2 year old, and trying to pull the house together. I figured for reasons of my sanity (which honestly, affects everyone else's sanity in this household), and for the fact that he was receiving 5 nursing sessions during the day (every 3 hours), he'd do just fine to get formula in him at night. Don't even get started on the "breast is best," the "you'll do whatever is needed to give your baby the best, which is breast milk," or the "don't feed that chemical infused crap to your child" speal. I've already been through that guilt roller coaster when my first child flat out refused to nurse and stumped the lactation specialists. I'm done feeling bad for giving my child formula when I need/want to. Don't judge. And if you do, I'm too tired to care and listen to your judgements. #sorrynotsorry I'm trying my best, and as a mama, I feel I deserve an "A" for effort. (Phew- Okay, off my soap box, for now.)

Anyways, in addition to his new medicines he was prescribed, Kal's Immunologist started him on immune-boosting injections, for three times a week. Having the home health nurse come to teach us to do the injections was stressful, to say the least. No one wants to willingly stab their child with a needle, even if it is, according to the home health nurse, "the smallest injection needle you can get." Jonald did the first injection. He was nervous at first, but was so brave. A couple days later, when it was my turn, I was so nervous I could hardly do it. Kal hardly flinched, but after finishing the injection, I balled my eyes out. Was this how life was going to be from now on? The worry of the ominous serious infections in the future, a feeding tube, night time pump feedings, piles of medicines, and now injections? Reality poured down on me in that moment. I usually try to stay positive, but it was all so new to me, to us, and it was all coming at us so fast.

After that, our daughter had a blood test done to see if she could be a match for Kal for bone marrow transplant. I was so nervous. I don't remember a time before then that she had her blood drawn. I was so used to that happening for Kal, but for my hardly-gets-sick 2 year-old, it made me extremely nervous for this simple blood draw. I was imagining a mixture of wrestling her down with a whole lot of tears. I prayed earnestly that she would be able to take the blood draw experience well. In the lab, she sat on my lap. The lab technician prepped everything and once the needle went in- nothing. My child did not flinch. Not even once. Not a peep. Even more weird, she stared at the needle the whole time, and I can't do that. After that, she got a Cinderella sticker and proudly showed her band-aid off to me like it was a badge of honor, even though she didn't even know why she was getting a blood draw done. I was shocked that she was so calm about the whole thing! Those small miracles: tender mercies, my friends, are what carry me through. Yay MIRACLES!

Then, Kal started having crazy congestion issues. I would have to use saline drops and the bulb syringe (a.k.a. nose booger sucker thing) just about every time he needed to eat, because he was so congested that he couldn't breathe through his nose at all. It started affecting his sleep at night, and he would wake up for feedings again. The night he slept through the night again, I think was for a reason, because I needed the energy to handle the news I would receive the next day:

"Last night was amazing though! He slept through the whole night without a peep until 8:30 a.m.! Oh I so needed that! On the other hand, I think Heavenly Father knew I needed that good sleep to handle the news of today. The immunologist called with the lab results and said his disease is the X-linked version, which is the more serious version of his disease. In addition, unfortunately, my daughter isn't a match for bone marrow transplant. So I guess the real waiting game begins. It is a big disappointment, but I'm trying to remind myself to accept it as God's will."

So, the wait for an unrelated bone marrow donor began. The doctors were concerned it may take a little longer for them to find a match for Kal because he is of mixed races, Caucasian and Filipino. DNA plays a huge factor in matching for bone marrow transplants, and mixing the races dramatically reduces the possibility of having a donor who shares similar mixed races, with similar DNA.

Then, in the beginning of June, we received interesting news:

"I talked to the nurse in the bone marrow clinic a couple days ago to get an update. She said she was surprised to find when she was researching for Kal in the bone marrow registry that there are a couple people that may be a match for him. She has sent lab orders to see how good of a match they really are, and if they're interested still in donating. That whole process is about 2 months, minimum. So, it's a good sign but also reality coming back, so kinda scary to think it might happen sooner than I mentally prepared myself for, haha."

The nurse also pointed out that although she couldn't tell the future (darn it!), she suggested that if we had plans on going anywhere during the summer, to go now, just in case the results came back saying there was a willing donor and close match for transplant. She said to be safe, to not leave past mid-July, so we started talking about possible places to visit and "party" before Kal's possible transplant. MIRACLES!

Again, it was back to a waiting game. In the mean time, Kal's congestion had worsened and turned into an ear infection in one ear, with the ear drum ruptured, as well as bronchiolitis. We were also dealing with almost constant flare ups of yeast diaper rashes. 

The doctors were concerned that his congestion for the past 4 weeks or so and now his new symptoms were caused by his NG (feeding) tube harboring bacteria. We went to the gastroenterologist to have it changed out, but upon examining Kal, the doctor said, "Hey, what do you say we take a chance and see how he does without this tube? Let's just give him and his nose a break, and see if he can still take his medicine well. He looks pretty healthy to me! He looks a little chunky now."

That was probably one of the most unexpected yet best news we had heard in a while. More MIRACLES! All we could say in response was, "Uh, sure!" So, the GI doctor cut him loose from his NG tube and took it out. Both my husband and I, upon seeing the tube covered with thick mucous while it was coming out, squinted our faces in disgust. No wonder our poor baby was having a hard time with congestion! 

"Someone is happy! Guess what's missing? He's free (for now)! GI doctor cut him loose today and said to give it a try without his feeding tube for a little bit and see how he handles taking his medicines! Woohoo! #Herestohoping #primarychildrens #soblessed #prayingstill"

Around 2 days later, his congestion had almost disappeared. It was amazing! Also, although he wasn't too excited about his medicine, he started taking his oral medicine well. All other symptoms subsided, Kal was acting MUCH happier, and it almost seemed like we had a "normal"(ish) baby again. It was such a relief, yet felt so weird to have things finally settle down. Ahh, MIRACLES. 

Explaining CGD: It doesn't define my child.

Since this blog is about Kal's life with CGD (Chronic Granulomatous Disease), it's probably a good idea to take the time and explain what CGD is. 

 

Let me start out by saying that although my child has this disease, it does not define him.

 

Let's look at the definition of the word, "define":

de·fine /diˈfīn/ verb
1. state or describe exactly the nature, scope, or meaning of.
2. mark out the boundary or limits of.

(Thanks, Google. Haha.)

 

 

There are statistics, science research, and scary outlooks and possibilities for this disease, but he is so much more than this disease. He may have limitations, but he is our sweet, smiley, baby boy. His little spirit is so great that I can sometimes feel it filling the room. At times, I almost feel as though the pureness of his spirit is too much of an honor to be in the presence of, compared to my small, weak, and selfish spirit. He is just one of those people that radiates joy with just a smile. It's an incredible experience to have him as our son.

 

Now, on to the complicated stuff. I'll try to keep it in layman's terms as best as I can. (Deep breath, everyone...)

Chronic Granulomatous Disease (CGD, for short) is a rare disease of the immune system. It is an immune deficiency, not an auto-immune disorder. This means that unlike an auto-immune disorder, in which the body attacks itself, those with CGD or other immune deficiencies lack something that helps the body protect itself and fight against certain infections.

Those with CGD lack the ability to create hydrogen peroxide and bleach within certain types of white blood cells, called phagocytes. This defect within those white blood cells causes the body's inability to kill off certain bacteria and fungi. That means if a person with CGD comes in contact and is infected with certain bacteria and fungi, those microorganisms could run rampant throughout the body and wreak havoc (aka, go wherever they would like and do a heck of a lot of damage to the body).

Chronic Granulomatous Disease is given it's name from how the disease presents itself: with granulomas. A granuloma happens when many immune cells sort of knot together in one place to create a mass or abscess. Therefore, typical problems for those with CGD include infections involving the skin, lymph nodes, lungs, liver, and bones. Pneumonia is a common problem for those with CGD, as well as liver abscesses, osteomelytis (infection of the bones), and issues in the gastrointestinal tract.

To help avoid possible infection, primaryimmune.org describes some basic precautions for those with CGD:

"Many physicians suggest that swimming should be confined to well-chlorinated pools. Brackish water in particular may expose patients to organisms that are specifically dangerous in CGD (Francisella philomiragia, Chromobacterium violaceum)... 

"A major risk to patients with CGD is the handling of garden mulch (shredded moldy tree bark) or potting soil. This type of exposure can cause a severe life-threatening pneumonia due to inhalation of the fungus Aspergillus, which likes to live in decaying plant matter. Patients with CGD should remain indoors during mulching in neighboring yards. Once the mulch is settled firmly on the ground and is not being spread or raked, it is much less of a danger to patients with CGD. Patients should avoid turning manure or compost piles, repotting house plants, cleaning cellars or garages, removing carpets, performing demolition, digging in dirt, dusty conditions, cutting grass, raking leaves, hay rides and barns. Patients should see their doctors about even minor infections."

There are 5 different kinds of CGD. They all come from mutations in the DNA. 4 of those kinds are autosomal recessive, meaning mutations (aka "mistakes") on the DNA from both parents, when combined, create the CGD.

 

The other kind is X-linked, meaning it was passed down from the mother to the child. It is typically much more common males, as males are given an X and a Y chromosome, and given that they only have one X to present it's traits and mutations, then it usually does. For girls, having this type of CGD present itself is quite uncommon, and is usually less in nature. But, if it runs in the family, girls are carriers of the disease. Since girls have 2 X chromosomes, usually the one X chromosome will make up for the mistakes on the other one, and therefore the disease will not show.

The X-linked version is much more common, yet typically more severe. This is the kind of CGD that Kal has. 

To help build a wall, so to speak, against possible infections, Kal must be given an antibiotic twice a day, every day. He also takes an anti-fungal medicine daily. In addition, three times a week, we have to inject him with a medicine that helps strengthen the rest of his immune system.

According to his immunologist, if Kal continues with his "maintenance medicine," he would get a serious illness/infection about every 1 or 2 years that would put him in the hospital for anything from a few days to a few months.

Life expectancy varies on the amount and severity of infections one with CGD endures. It is a lot better than it was years ago, and getting better as time goes on. Currently, the chances of one with CGD to live to 35-40 is around 40-50%. I still don't like those chances.

CGD can only be cured through a bone marrow or other type of stem cell transplant (as described in my last post). Also described in my last post, there are many possible complications and risks involved in a stem cell transplant. But, at least it's a chance.

If you would like more information on this topic, I have received information mentioned above in this post from the following websites:

http://www.actimmune.com/

http://www.cgdsociety.org/

http://primaryimmune.org/

Heavy Decisions

 
Trying to decide whether or not to have our son go through a bone marrow/stem cell transplant was heart-wrenching. No parent wants to gamble with their child's life and quality of life. We're not fortune tellers, not that I believe in fortune tellers anyway. We don't know what the future holds. We also felt pressed for time to decide, because with Chronic Granulomatous Disease (CGD), especially with Kal having the X-linked version, he would most likely get a serious illness about every 1 to 2 years that would put him in the hospital. The fewer amount of serious illnesses and infections a person with CGD has, the stronger the body is to be able to endure and recover well from the transplant process.

For the transplant, there are actually a few options. The main idea is to get stem cells from one person and put them in someone else. Stem cells are highly concentrated in bone marrow, but can also be found in the blood as well as the blood from an umbilical cord. In a transplant, the patient can either receive the donor's bone marrow, peripheral blood (stem cells harvested from the donor's blood), or the blood from a donated (or banked) umbilical cord. Technically, the doctors usually refer all of these type of procedures as stem cell transplants, or something in that general description.

The process of pre-transplant, transplant, and recovery varies from patient to patient, based on a variety of things including age, why they are needing the transplant, overall health and health history, type of transplant, and much more.

In our decision process, I wrote down my thoughts of what scares me most about doing the transplant, and what scares me most about not doing the transplant (and when I say bone marrow transplant, I'm referring to any type of stem cell transplant):

What scares me most about the transplant? The whole process, haha! We'd have to be in the hospital a little over a week while they give him chemo to lower his immune system really low, so his body would be more willing (or maybe more defenseless) to take the donor's bone marrow (or stem cells). In that time, if he catches anything, he could die before the actual procedure. Then there's the actual procedure... just the thought of that makes me feel sick, let alone the fact that the bone marrow clinic wants to test my daughter to see if she's a match, because siblings have a higher possibility to be a match than other family members. So, she wound be getting lots of blood tests too, and would have to stay in the hospital maybe a week to recover. And the thought of having two kids in the hospital is almost too much to bear! Plus, I don't wanna feel like I'm "using" my daughter and putting her in extreme pain that she didn't agree to, for the sake of her brother. I mean, she's so young. 

Plus, what if she isn't a match? They said it would be harder to find a perfect match because of the mixed demographics of my husband and I (Filipino mixed with white). Then there's also the whole possibility that the bone marrow transplant doesn't take as well as they would've liked, so they'll want to do another one. I mean, just the genetic testing for him is about 5k, plus if they were to test my husband and/or me, that would be another $500-1,000 each. The bone marrow transplant would be about 100-200k. I don't know how it will all work out with insurance. There's also the possibility of the donor's bone marrow attacking my son's body, and who knows how serious that could get. And then they said recovery is usually about a month in the hospital. My mom said she could fly in to watch Kayelee during that time so I could stay with him, but it would be so hard. I don't know if I could even visit with my daughter during the weeks of chemo and preparations, you know, just being worried about her being sick or carrying some illness home front the playground or nursery.

But, if everything works out, then he will have a normal person's immune system, and I think he would not have be on lifelong medications anymore. And he could not have to be worried about playing outdoors sometimes or being overly cautious to stay clean and trying avoid being sick.

What scares me the most about not having the bone marrow transplant is his quality of life, his lifespan, and the constant stress and worry about medications and when the next serious illness would pop up.

He can't help us garden, mulch, mow the lawn, swim in non-chlorinated water, play in the dirt, play in the leaves, and should stay away from forests in general that tends to have leaves or other decaying matter. He can't be outside if someone is mowing the lawn or mulching. His medicine even says to avoid long exposure to sunlight. He will also have to be on medicine and shots his whole life. Right now, he's on 5 oral medicines, and 3 topical creams. He will start having shots given at home to boost his immune system, 3x a week. In guessing once he gets better, he will just be on 3 or 4 oral medications for his whole life. He will most likely get seriously ill (like long hospital stay kind of stuff) about every 1 to 2 years. That means he'll miss a lot of school eventually. He's already developmentally delayed a little, pretty much just motor skills, because he's been sick so often. 

Going to school is going to be stressful. His teachers will have to keep their classroom squeaky clean, but even still, schools are a crazy bacteria spreading ground. And I really don't want to or even think I'm capable of home schooling him. In addition, as far as life expectancy goes, it all depends on how many and how serious the inventions are that he would get. His body will come to a point that an infection might be too bad that antibiotics couldn't fit the infection because it is too great. Or, his body could just have too much damage from all those illness over time, and wouldn't be able to handle it anymore, so his body just would give up.

If we want to do bone marrow transplant, they said the younger they are, the better they seem to do. Also, my son, although he's been sick a lot, he hasn't had a serious illness yet (such as pneumonia or abscesses on his liver, lungs, etc. or ostomelytis.) His Immunologist said that they tend to do better with a bone marrow transplant if it happens before they ever have a serious illness. So, I feel like this decision is basically a race against time until he gets a serious infection within the next 2 years or so, because then the whole game changes after that. 

Honestly, both options scare me a lot.

I mean, Jonald (my husband), gave Kal a blessing saying he would be healed, and in return, he would serve God in all his days, including going on a mission. I keep having this feeling that the only way for him to be "healed" would be with the bone marrow transplant, which would make him healthy enough to serve a mission later. 

If all goes well, it will be totally worth it! It's just while doing my research where they tell you all that could happen that brings back the fear and doubt sometimes. It just really rips at my heart because we (both my husband and I agree fully on this) feel it's best to go through with the bone marrow transplant and we're just trying to have faith that no matter what complications might happen, at least we tried or best to help him.  Our Bishop was very kind to drop by our home and give us each a Priesthood blessing. It gave me a lot of peace that I needed to feel.

Finally, we decided a bone marrow transplant would at least give him a better chance, despite the risks, to have a longer life, with better quality of life. All of our or prayers, scripture study, research, random circumstances that have happened recently, and Priesthood blessings seem to be pointing in that direction. When we both talked about it, we both felt when his Immunologist was talking about it initially that that was what we were supposed to do, but the things that came after to support those feelings helped a lot too. 

I have been feeling so much more hopeful and happy since I can see his medicine is finally making him feel so much better. I do have moments where my mind will flash to imagining how it will be in the hospital through that whole process. I think, "Oh he's so happy now, and I know he will be going through bad stuff in the near future and feel like crap again and be grumpy again. It makes me think and doubt if I want to purposely put him through pain again with a bone marrow transplant. But then I have to remind myself to take it a day at a time, to enjoy this time of him being happy and not worry about when he will be unhappy temporarily in the future. I have to remind myself that this chance of the bone marrow transplant will hopefully keep him from feeling more pain and sickness over the years of his life. 

 

Opening Hearts and Hospital Visit

“If our view is limited to mortal life, some things become unbearable because they seem so unfair and so permanent. “ –Boyd K. Packer

As you might be able to imagine, getting to this point in the process, waiting for more test results to come in, after all Kal had been through, is exhausting. Luckily, I have the Gospel of Jesus Christ in my life. It has brought me so much strength. Also, through this experience, I have been blessed to talk with many people who have gone through medical trials as well. People that before, I was not having normal, daily conversations with before, have approached me and opened up about what they have endured before, or currently. These people have lifted me up more times than I can even put into words. May God bless those individuals for opening up their hearts to me and my family! I know talking about what medical issues they, their family member, their friend, etc. have endured or are enduring brings back a lot of memories and strong emotions. I know that because that's what updating this blog has done for me. There are days that I just feel sick to my stomach after writing a blog post, because it brought back everything of those moments I was writing about. 

In order for me to help others to understand how it feels like to be in this situation, and allow others who are going or have gone through similar situations know their feelings are valid, I want to be pretty candid with how my opinions and feelings were/are in these moments. 

I've gone back, and included some of my thoughts shared with the aforementioned people, so you will know what was really going through my head in those times:

"In the moment it feels like this will never end. I never get my hopes up anymore that the tests will come back with anything conclusive. That way, I won't set myself up for disappointment. The doctors had some guesses, but those tests came back negative. Thankfully, it's not lupus or rheumatoid arthritis. ... Other than that, we are still waiting. I heard them discuss amongst themselves (the 2 Rheumatologists and 1 Immunologist) about the possibility to talk to the GI specialist."

"I guess the wondering used to bug me a lot more than it does now. I guess I'm just waiting to be surprised that they finally figured it out."

In the beginning of May, we finally got a call from his Immunologist. The test results were the same as the first results that came in, which meant they were almost positive Kal has Chronic Granulomatous Disease. This news was crushing, yet we couldn't help but count our blessings. 

In the words of my sweet husband's post on Facebook, after we found out:

"To all of our friends who prayed for my family, wished us well, and prayed for our baby Kal's recovery, in a way your prayers were answered. It is not the best answer we were hoping for but I feel like all of you guys should know the answers we received from your prayers. I wanted to share this experience to let you know that our Heavenly Father hears and answers our prayers. This is the chronological order of the answers that my family received all in one day. Yesterday morning, my boss at my new job all of a sudden came in my office and shut the door. I thought I did something wrong. He then told me that he got an approval that I will be given a raise. I knew that this was an answer to our prayers because I have only been working in my new job for 5 months but he gave me a five-digit increase in pay. I cried in front of my boss because we really need it. Then when I got home from work, my wife was on the phone with the doctor to find out that our son Kal has signs of an incurable disease called Chronic Granulomatous Disease. To summarized it, our baby's immune system has malfunctioned and that he will always be sick for his entire life. His body will not have the ability to fight sickness. Starting last night, Kal has to be in Antibiotics for the rest of his life. God may have not given us what we wanted, to heal our son, but he blessed me and my family with the an extra means to maintain the drugs that my son needs to survive. It will be a struggle and challenge everyday, but I know that we will make it. It is heart breaking to hear that our baby will be sick for his entire life. My wife has been really strong and caring. I love her so much for doing everything to take care of our kids. I thank you all for your prayers. May our good Lord bless you for taking a time in your day to pray for us even just once. — feeling blessed"

 

The fact that he has this life-long disease made it hard to bear. I tried to keep positive thoughts, but in some moments, I coudn't help but think, "Why does this sweet little baby have to have this disease? Couldn't it be something else- something that could be easily fixed, and then easily forgotten?"

My conversation with of my friends at that moment:

Her- "Just saw that the Dr gave you a diagnosis. How are you guys taking it, holding up?"

Me- "Uhm, it's hard. I'm not going to lie or try to act like I'm just fine. I'm just trying to soak it all in and all the emotions..."

Her answer was simply perfect, and exactly what I needed to hear in that moment:

  "I'm glad you are allowing yourself to feel. Mourn if you need to. Life long diagnoses are some of the hardest to hear. ... I hope the Dr. can help you guys adjust to your new normal. Modern medicine can bring about many of God's miracles. We'll keep praying for you guys!"

At that time, Kal was also having issues with a new rash/skin lesions growing on his face and legs, into big, hard spots. He was also throwing up his medicine whenever we gave it to him, which was twice a day. Also, he had a persistent yeast diaper rash and mouth sores. In addition, Kal had come down with some sort of congestion and cough. The night before we received that call, we had to go to the InstaCare, and then the Emergency Room at Primary Children's, because he had a fever of 102 and was occasionally having difficulty breathing while coughing. He had also not been gaining any weight in his previous, recent appointments, which made the specialists more concerned for his well-being.

With all of that going on, his Immunologist thought it would be best to admit him into Primary Children's Hospital to try and get everything under control. Throughout the hospital stay, even though we were there for 4 days, it was absolutely exhausting. I don't even know how parents keep sane and have the energy during extended hospital stays. Specialists were coming in and out of our room so much that at one point, there was actually a line of doctors and doctor conferences amongst different specialists outside of Kal's hospital room door.

Despite it all, Kal was still so cute with his sweet smile. He kept the specialists and nurses melting in cuteness whenever they would check in on him. 

"All smiles and curiosity with his IV line, despite all the pokes. This kid is the sweetest, even during hospital stays. What a charmer!"

 Jonald: "Day 2 in the hospital. After lots of blood, skin and genetic tests done today, Kal had to be put to sleep as they did colonoscopy and endoscopy then a tube to his nose for feeding and drugs. The doctor suggested to think about considering a bone marrow transplant. He's been a trooper though! Showing his mom and dad the definition of being tough and strong. Please continue to pray for our child. Thanks!"

Handing off my son to the nurse, even though it was to have a simple endoscopy, colonoscopy, and feeding tube put in, was almost too much to bear. With everything else going on, in that moment, everything snowballed down the hill and fell on my chest. I wanted to hold my baby close and protect him from any more pain and illnesses. But, in the back of my head, I knew it was all those doctors and nurses who were the ones that could help my son best. I had done all I could as his mama, and they needed to do their part to help my son.  After he had his procedures done and had his feeding tube put in, Jonald and I went to the surgery recovery room for when he woke up. He was so irritated with the feeding tube. He kept coughing and gagging. I literally had to lean against the wall while first looking at him with his feeding tube. I just felt so lightheaded and sick to my stomach. I wrote to my friend: "I am feeling really nauseous at this point. I don't feel hungry most of the time for that reason, but I knew I needed nourishment to feed Kal, so I ate anyway."

After that, it was just a waiting game to see if his inflammatory counts would go down, as well as if his other symptoms subsided, especially his cough. We were able to go home the next day, and boy were we glad to be home! It was such a relief to sleep in our own bed again, and not have nurses and doctors coming in all the time, even throughout the night. 

As good as it felt to be home, the weight began to be very heavy on our shoulders to make a decision for Kal, concerning if we wanted him to continue with his maintenance medicine his whole life or to opt for a bone marrow transplant sometime. We knew we were kind of juggling with time before he would have a serious infection and put him back in the hospital again. If he would have a serious infection, it would increase the risks of a bone marrow transplant. We began to pray earnestly to be guided in our decision, and for peace in whatever decision we would decide to make.

“Heavenly Father … sent His Only Begotten and perfect Son to suffer for our sins, our heartaches, and all that seems unfair in our own individual lives." 

-Linda K. Burton

 

Feeling Dizzy

After waiting about a week, Kal's Immunologist called and said his blood work came back with no answers. His Dermatologist also said that the bloodwork ordered by them, as well as the rash scrapings, came back with no answers. Grrrrreat. They set appointments for Kal on the same day, back to back, which was nice that both offices and doctors would coordinate like that, so we wouldn't have to make separate trips to Primary Children's, which is about 40 minutes away, one way.

In the meantime, Kal got another ear infection, but just in one side, and just that one side had ruptured. His rash had also changed in appearance as well.

Kal's immunologist also wanted him to be seen by a Rheumatologist. In order for us do that, they wanted Kal to have what they call a "skeletal scan" before the appointment. Upon arriving at the hospital that day, I thought a "skeletal scan" would consist of one x-ray of his whole body/skeleton. Well, it turns out that it actually consists of about 17-21 x-rays of different areas and angles, which made sense once they explained that they needed closer up views of his bones and joints to see if there was any issue.

My husband posted: "Our poor baby Kal is in the first of his 3 hospital appointments today. First, 21 xrays is being done right now to his poor little body, then an appointment with Rheumatologist, and last, Dermatologist is going to dig deeper in his skin to get more samples for more tests. 16 blood tests and labs last week were not enough to finally find out what's making our baby sick since he was born. Doctors and specialists are baffled and still have no idea what's going on. Just weird that most of the time the best way to feel better in situations like this is to just be alone then breakdown and cry."

Luckily, the x-rays came back showing hardly any issue, other than a little osteomelitis. They weren't concerned about that part. The Rheumatologist talked with us, and then discussed her thoughts with the Immunologist in the room with us. They ordered more lab blood work to be done, and wanted to discuss Kal with another Rheumatologist later, so they told us to return to their office once we were done with the Dermatologist.

At the Dermatologist, they wanted to take skin biopsies of two areas. Yikes! A skin biopsy is basically taking a core of skin out so they can get a bigger, deeper sample than just doing a skin scrape with the scalpel. The area was so wide and deep that they had to numb the area first (I really don't think that gave him enough time to have the numbing shot settle in, to be honest.) Then, after they took the biopsies, they had to put 2 stitches in each of the 2 areas. I couldn't bear to watch, but holding my child while they're screaming like that made me feel queasy and dizzy. Even after they finished, looking at his poor little stitches put my stomach in knots. We had to go to his Pediatrician a week later to get them taken out, and like you probably would guess, I couldn't watch during that either.

About 2 weeks later, we got a phone call from the Immunologist, saying all the blood work came back all negative, except one test had suggested he may have Chronic Granulomatous Disease. I had never even heard of that in my life, but apparently just the possibility of having it was a big enough deal to put him on medicine right away- an antibiotic and antifungal. She said Kal would have to have that lab work redone to help them confirm a diagnosis. Also, the Dermatologist called saying the results were inconclusive, other than they found one granuloma (caused by when many white blood cells knot together). This was pointing toward the hypothesis of Kal having CGD, because granulomas in the body is the main part of Chronic Granulomatous Disease.

The Immunologist gave me a website, www.primaryimmune.org, to learn more about CGD, just in case Kal really did have it. I read the information on that website, but it seemed they were not being as straightforward or blunt as I'd like. So, me being dumb, I Googled it. That's when the world as we knew it came crashing down. I was half happy that we had possibly found an answer to Kal's issues, finally. But, in my heart I also wished to Heavenly Father, "If we are going to have an answer, please, just let this awful disease not be the real answer." I had the hope that the results would come back saying, "Oh, just kidding, your son doesn't really have that. Sorry to worry you."

All we could do was take Kal in for his blood tests, wait, and hope.

I know my Savior lives and walks along beside me throughout my life. Throughout my life, and especially lately, He has carried me when I have felt unable to stand, embraced me when I felt alone, given me patience, and filled my heart with love. Above all, Jesus Christ felt my heartaches, my pains, and my worries. He atoned for my sins so I can have have the chance to repent of my pitfalls, and have hope for the future. He loves me, with His perfect love, and wants me to have eternal families and eternal happiness. 

Not "Very Juicy Ones"

Before our appointment with the Immunologist, Kal had yet another double ear infection, with ruptured ear drums. He also had another bout of strange rashes on his face and a little on his arm. It was almost starting to be a routine of him being sick or not feeling well that I was almost used to him screaming a lot. At some times, my mind wouldn't even register that he was crying anymore. Maybe God was just turning down my hearing at that time so I could survive and not go crazy.

Our appointment with the Immunologist turned out to be quite the busy day, but looked like we may get some answers soon.

Originally we just had an appointment with just one Immunologist, but after speaking to her, she was kind of stumped as to what could be going on with Kal. She then discussed Kal's symptoms and history with one of her colleagues, who ended up taking a look at Kal as well. Then, due to his rash symptoms (both past and present), the Immunologist was so kind and concerned about Kal that she borrowed my phone (which had pictures in it of his previous rashes), walked down the hallway, showed the pictures to a dermatologist, and set an appointment for Kal for the next hour. They also ordered a list of about 16 things to be tested for in Kal's blood at the lab. Phewie.

At the dermatologist, they seemed very intrigued about Kal's history of rashes, especially that they all appeared differently. They wanted to have lab blood work ordered for him, and they took some skin samples from about 3 or 4 pustules- eek. We're talking, take a scalpel and scratch at my child in numerous places. I didn't watch them do it, but I could feel them scraping at him while I held his arms and legs down. They even had a hard time getting much of because what they thought was pus in those spots was actually kind of hard inside and the areas weren't, as they put it, "very juicy ones" that they needed for their samples. Blehhhh. There was the main dermatologist in the room doing most of the dirty work, and also about 4 other girls standing in there and asking questions, who were going through their residences. That's the funny thing- when specialists see things they're not used to seeing, they kind of got all excited to examine Kal and figure out what's going on. So, they have their heart in Kal more, because these are the things they are used to seeing and studying in their books, and now they get to see it in real life. At the second appointment with the dermatologist, they even asked permission to take photos of his rash so they could show it at some kind of conference. Haha what do you even say to that? "Uhh, sure? I'm glad my kid's rash is weird enough to help you out for your conference?" Whatever. (;

A Step in the Right Direction, and the Sweetest Girl

The next couple of months were a blur of random sicknesses.

We had just switched to a new pediatrician in our town where we had moved a few months before. Funny story, I initially made an appointment with another doctor, but had the nagging feeling that I should cancel the appointment and have Kal seen by someone else. I had never met the doctor, yet, I figured it wouldn't hurt anything to listen to my gut feeling and cancel that first appointment. I did just that, and found a different pediatrician for him.

Our first appointment with him was because Kal had been acting grumpy and had pus coming from both of his ears, yet, no fever. He also had another kind of rash on his face that looked pus-like, as well yeast-looking rashes on his neck, behind his ears, and in his diaper area. It turns out he had a double ear infection, and both of his eardrums had ruptured. The doctor was unsure of the cause and type of rash he was dealing with, other than his obvious bad yeast rash. Poor little guy!

At that same appointment, after explaining Kal's whole health history, the pediatrician seemed a little overwhelmed and surprised that he'd been through so many things in his short life so far. He then confirmed all my previous beliefs by stating he thought all of these random illnesses were most likely related. Finally! I mean, when you've had doctors telling you your son was "just maybe really unlucky" with all those illnesses, even though your gut is telling you that there is probably some underlying reason, yet they refuse to entertain you concerns, it gets a little frustrating.  So, he referred me to an Immunologist to see if there's something going on that's causing Kal to not be able to keep up against all the illnesses he's faced.

Funny thing, I didn't expect much to come from our Immunologist appointment. I was so used to hearing no answer. I didn't want to get my hopes up that they would actually figure out what's going on.

But really, I was shocked and had no idea Kal's ears were that bad, and my heart ached to think how much pain he must have been in at that time, especially with his two different kinds of rashes going on at the same time. On the way home, I began sobbing. My daughter Kayelee was so sweet. She asked me, "Mommy, are you crying?"
Me: "Yes, I am."
Kayelee:"Mommy, don't be sad. Don't be sad."

In my times of no strength, when I couldn't help but cry, Kayelee somehow knew I needed her. There were some times in this whole process that when I was crying, she would just come up on the couch and sit next to me. She didn't say anything. She would just sit there and slowly lean her head on my arm. Sometimes in those moments she would give me a hug in the perfect moment I needed one. In the times she's not too busy practicing her diva skills, she really is just the sweetest girl.